Helpful Hints

My Day at the Caloundra Farmers Markets

The Caloundra Farmers Markets were really a great Venue for my first Public Awareness Raising Attempts.

The people were friendly and easy going. It is a much more relaxed environment than a Shopping Centre and I found that the other Stall Operators were helpful and very kind.

As Mobility Issuess can cause an added burden to the health of the person with CFS, I was delighted to find the energy efficient set up of the Markets.

I drove my car directly onto the site and I set up directly in front of the car. Some very kind Stall Operators gave me a helping hand to set up my table and Pop Up Sign.

I sat down for the morning and greeted passersby asking if they would be interested in helping me with a petition I wished to present to the Government.

Most people were curious and asked what it was about.

I explained all or part of the following depending on how much information a person needed ...

... "a new Retrovirus has been found. Called XMRV. It is a Gammaretrovirus and is found in 23% of the most Aggressive Malignant Prostate Cancers and in 85% of people with Chronic Fatigue Syndrome.

It is in Research at the moment so no causation has been proven. However they found that if you take the Blood from a person with CFS and add it to healthy Prostate Epithelium you get XMRV viral buds. This is a very very strong indication that XMRV can be transmitted via blood and blood transfusion.

As Research is continuing they have found that this Retrovirus favours Hormone Type Cells and after the initial infection in the Prostate it travels to both male and female Reproductive Organs.

The majority of people with CFS are Women and they have 25 times the National Average of incidence of Lymphoproliferative Malignancy. Breast Cancer is high within the CFS Community.

Here in Australia people with CFS have been banned from donating blood - but not people with a familial history of Prostate and Breast Cancer.

The petition is to bring Testing for XMRV to Australia. A very accurate test for XMRV is available at the Whittemore Perterson Institute and other countries have used this technology successfully.

I believe that while we wait for Research Outcomes we should test our blood supply and keep it safe from XMRV and limit its spread throughout the Australian Population."

Some people were hesitant to sign the petition because they needed more information. I was prepared for this eventuality because it is the way I think also.

I had printed out some A4 pages of the FACC Web address and simply used a ruler to tear off a section and presented it to the person. I was sure to let the person know that the website is not a professional website and that it was designed to facilitate the spread of information about CFS and XMRV. Most people were very receptive and gave me a big understanding smile.

I explained that the Petition could be downloaded directly from the website and that children could also sign. I asked that once they had finished researching XMRV and were happy to sign if they could tell their neighbours and family and work colleagues about the petition and pass on the website address. The more people that sign the petition the better our chances of getting the testing into Australia.

Some Practicalities For This Venue

It Rained

Luckily I was seated directly in front of the boot of my car and I quickly rescued the signed petitions. I have also learnt that the ink on the petitions runs. I will be looking into improving this issue ASAP

It was very windy

The Pop Up Sign could not stand up to the wind and so down it came. This meant more talking to get my initial message across.

There was a small site fee to pay on the day and overall it was a very worthwhile Morning.